MRC’s Prof Stephen Holgate: There is a pressing need to understand the causes of CFS/ME so we will NOT spend a penny of the 1.6 million pounds to look for the cause of ME

Medical Research Council announces ME/CFS research projects worth £1.6m

From a UK Medical Research Council press release: embargoed until 00:01am, 21 December 2011

The Medical Research Council (MRC) has awarded more than £1.6m for research into the causes of the debilitating condition chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

The investment will fund five new projects to investigate the mechanisms and underlying biological processes involved in the illness, which could eventually lead to better diagnosis and the development of more effective treatments.

CFS/ME is a complex and debilitating condition that affects around 250,000 people in the UK , including children. Symptoms include profound physical and mental fatigue, muscle and joint pain, disturbed sleep patterns and concentration and memory problems. The combination and severity of symptoms varies from patient to patient, making it a difficult condition to diagnose and treat.

Professor Stephen Holgate, Chair of the MRC’s Population and Systems Medicine Board, said:

“There is a pressing need to understand the causes of CFS/ME, and the MRC is delighted to announce substantial funding to address this. The quality and breadth of the scientific proposals we received in response to our funding call exceeded expectations and led to us funding more studies than we had originally anticipated.

“We’re especially pleased that the five new projects address many of the priority areas identified by our CFS/ME Expert Group in collaboration with charities and leading researchers in the field. We hope the awards will drive forward the research agenda in this area, paving the way for new diagnostic tools and treatments.”

Dr Charles Shepherd, member of the MRC CFS/ME Expert Group and trustee of the ME Association, which has agreed to provide £30,000 to co-fund one of the five projects, said:

“The ME Association is very pleased to learn that the MRC has followed up the research priorities identified by the Expert Group and agreed to fund five high-quality studies that aim to identify important biomedical abnormalities that may be involved in the underlying cause of CFS/ME.

“The patient community will particularly welcome research involving biomarkers/biological fingerprints, which could lead to a diagnostic test, and immune system abnormalities, which could lead to more effective forms of treatment.

“The fact that one of the studies is being co-funded by the charity sector marks a much needed step forward in co-operation between patients and researchers in this field. This initiative could be utilised to help fund additional research involving the priorities not yet covered by this announcement.”

The MRC has striven to stimulate high quality CFS/ME research for a number of years. Most recently the specially constituted MRC CFS/ME Expert Group, which involves leading researchers in the field and related areas, along with representatives from two CFS/ME charities, identified six priority areas where important research questions remained unanswered.

In February 2011, the MRC issued a £1.5m call for proposals in these areas, aimed at encouraging fresh partnerships between established CFS/ME researchers and those with strong scientific credentials, but new to this field. The key areas were:

In response to the high quality of the applications received, the MRC decided to provide an extra £150,000 to support the package of successful projects. The awards range in total value from £120,000 to £450,000 and the successful applicants were:

A full list of the five fully-funded programmes is included below, along with short summaries of the research proposals.

Identifying the biological fingerprints of fatiguePrincipal investigator: Dr Wan NgInstitution: Newcastle UniversitySummary: Researchers will analyse the immune systems of more than 500 patients with primary Sjögren syndrome – a chronic condition with similar symptoms to CFS/ME, including intense fatigue. Scientists will look for immune system abnormalities in these patients to help them identify the biological “fingerprints” of fatigue. It is hoped this will improve their understanding of the mechanisms of fatigue with a view to developing new treatments. It also offers the hope of a clinical test for the diagnosis of CFS/ME.

Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairmentPrincipal investigator: Professor Julia NewtonInstitution: Newcastle UniversitySummary: Researchers will explore what causes dysfunction of the autonomic nervous system – characterised by dizziness and light-headedness – present in up to 90 per cent of CFS/ME sufferers. They will use functional magnetic resonance imaging (MRI) to measure changes in blood flow to the brain and how this relates to cognition and nervous system dysfunction. The researchers hope their work will lay the foundations for new diagnostic tools, a better understanding of nervous system abnormalities and the development of targeted treatments aimed at reversing these abnormalities.

Modulation of aberrant mitochondrial function and cytokine production in skeletal muscle of patients with CFS by supplementary polyphenolsPrincipal investigator: Professor Anne McArdleInstitution: University of Liverpool (joint with the University of Leeds )Summary: Scientists will use a newly-developed technique to study the energy-generating components of muscle cells (mitochondria). Some studies have suggested that mitochondria may be dysfunctional in CFS/ME, leading to an energy deficit. The scientists hope this will help them learn more about how CFS/ME develops and becomes a chronic condition.

Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?Principal investigator: Professor David NuttInstitution: Imperial College LondonSummary: Researchers will study sleep disturbance – a core symptom of CFS/ME. Experts in CFS/ME, sleep and psychopharmacology will use a drug to increase deep restorative sleep in CFS/ME patients and measure the effect on their brain function during waking hours. It is hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers, with a view to developing new therapies.

Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndromePrincipal investigator: Dr Carmine ParianteInstitution: King’s College LondonSummary: Researchers will examine the effects of a protein called interferon-alpha (IFN-alpha) on the immune system. IFN-alpha is produced as a protective response to viral infection and is commonly used to treat infections such as hepatitis C. IFN-alpha also induces fatigue and flu-like symptoms in patients, similar to that experienced by patients with CFS/ME. The team will follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue. Their work could lead to a check-list of blood measures to predict who will develop CFS/ME, as well as identifying new targets for therapy.

For almost 100 years the Medical Research Council has improved the health of people in the UK and around the world by supporting the highest quality science. The MRC invests in world-class scientists. It has produced 29 Nobel Prize winners and sustains a flourishing environment for internationally recognised research. The MRC focuses on making an impact and provides the financial muscle and scientific expertise behind medical breakthroughs, including one of the first antibiotics penicillin, the structure of DNA and the lethal link between smoking and cancer. Today MRC funded scientists tackle research into the major health challenges of the 21st century.www.mrc.ac.uk

So there’s*a sleep study, using drugs to increase slow wave sleep, with the Prof that annoyed the government by saying horse riding was more dangerous than ecstasy and society was illogical in its prohibitions (Nutt, Imperial)(PSY)*Study into mitochondrial defects – not on ME, not necessarily even on CFS/ME (McArdle, Liverpool)*Following HEP C patients being treated with interferon alpha, which is downregulated in Lombardi 2011, the cytokine study (Pariente, Kings)(PSY)*Immune system analysis IN SJØRENS SYNDROME (Ng, Newcastle)*Study of brain changes that cause dizzyness, using fMRI to study brain blood flow (Newton, Newcastle)

How come 2/5ths of the studies funded are not directly looking at ME? Why is that? I thought this money was ring fenced for biomedical investigation into ME. It was little enough as it was. How come a different 2/5ths are being run at Kings and Imperial, by the usual suspects?

I know the argument will be that the results will also apply to us, and Sjørens syndrome is very similar, but really! I feel like the bully’s stolen my lollipop that Santa gave me. Only one out of five studies can strictly be said to be filling the original brief, Newton’s, from the information given so far.

This money represents £6.50 per head of us. Not a vast amount. Am I being too suspicious…? The devil will be in the detail, no doubt.

Doesn’t look like they are saying Sjogrens or Hep C are similar to ME (ME/CFS). They appear to be saying ME is “CFS/ME”, which it is not. That CFS is fatigue, which it is, but that they can measure this subjective symptom in exactly the same way in other diseases, although scientifically they cannot. So patients with ME cannot really be sick they only have fatigue.

Doing this they would be in breach of the WHO classification system, as it places different entities in more than one rubric. As CFS (neurological ME/CFS) although not said to be ME is place at G93.3, Sjogrens and Hep C are placed elsewhere.

I feel throughly insulted and dismissed by the MRC who clearly have no intention of looking for the cause of this disease.

"Plenty of people are still dying of diseases which other people do not believe." (Dr. M.N.C. Dukes).CBT and GET for ME: "There is no nonsense so gross that society will not, at some time, make a doctrine of it and defend it with every weapon of communal stupidity."

Robertson Davies

THE NICEGUIDELINES BLOG VERSUS THE NICEGUIDELINES

These are NOT the NICEGuidelines. This is "The NICEGUIDELINES BLOG." What are the differences:

The NICE Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach.

This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion.

I’m not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base.

So if you value an opinion, formed as a result of participating in many ME activities, for example being bed bound for years, you have come to the right BLOG. All these activities have allowed me to form an opinion as a Doctor and as a Patient. And that is important as the voice of the latter is discarded by many including NICE.

If you don’t read this blog, you will miss out on “accredited” medical education. If you do read it, you may actually become a doctor who doesn’t stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command.

So, if you arrived here for the straightforward GOBSART approach, I will disappoint you. If you are interested in forming your own opinion about ME, and other interesting things, read on!

About Dr. Speedy.

I am a Family Physician or GP as it is called in Australia or the UK. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak. I’ve got only one patient, ME, or is it me?

I graduated as a doctor a long time ago, and I am the founder and editor of The NICEGUIDELINES BLOG, an internet based ME BLOG that is devoted to critical reading and cheering you or ME up.

I have the following conflict of interest: I would like to get better and see that the wasting of public money on CBT (talk therapy for a neurological disease, really helpful) and other silly therapies for ME stops, and will be used in better ways.

My goal has always been to help, and if possible, cure patients. With this disease you will soon find out that many psychiatrists and psychologists are only in it to make money and get their name in the spotlight. And what happens to and with the patients is irrelevant.

I stand to benefit both mentally, physically and also financially if this silliness would stop, and I would get my health back, and I can go back to work and have a normal life again. Please evaluate my postings with this in mind! And remember, there are also (lots of) psychiatrists and psychologists who haven’t switched their brain off.